Category: Weight Restoration


For once, I am going to exercise some discipline and force my raging, anorexic mind and (consequently) my restless, driven body to be still, while I sit here and type a post on my blog.

It’s something that I have been avoiding for a while, the reason born of a desire for this blog to be one that inspires others with eating disorders, and informs those who seek to understand more about the illness.

I can’t accurately describe my resentment towards the disparity between my healthy, passionate heart and my sad, bony frame. I hate the fact that I am desperate to encourage your suffering friend / sister / self, to offer hope and triumph,  whilst my own body becomes less and less and my own story one of failure. I long to prise the illness away from others yet I am riddled through to my marrow.

It’s disheartening. I always said I could write a comprehensive guide to Anorexia but still die of it.

It sounds as if I am giving in..

Don’t be fooled. I will never truly abandon the fight. I am certain that somewhere, albeit amazing at Hide and Seek, somewhere,  I still hold a small seed of hope.

I’m posting this because despite the horrible discrepancies I write of, my determination to avoid hypocrisy demands that I am honest about my own journey. That means admitting that I can’t find a way out; admitting that whilst I have the passion to educate the uninitiated and to offer hope to the hopeless; I can’t really do that until I have battled and won. It’s no good my standing, almost dead on my feet, whilst I preach recovery and restoration.

20170228_162610-02.jpeg

Do as I say, not as I do… The familiar face of Anorexic hypocrisy!

I am in a dangerous place, with a life threatening BMI and the illness is wrecking havoc. The shortage of beds on a national scale mean that I haven’t yet been put into hospital, but this is what my clinician is waiting for. She thinks it’s the only way ahead right now.

Determined to continue the trek, I have temporarily set up camp in the desert (not to be confused with the similarly spelled ‘dessert’ – Delight at irony still as prominent as ever). My arid landscape affords a pathetic diet, my feet are too tired to walk much further and, some of the time, I have my head in the sand. There are occasions though, where I can look around me and take stock of these hostile surroundings, and perhaps accept that I may need to be removed from here until I’m stronger again. There are also occasions where, if I squint at the burning horizon, I imagine a glimpse of water, of greenery.

I’ll let you know whether or not it’s anything more than a mirage.

For now, let’s try to hope

spaghettiJust eat! It’s really that simple”

The well meaning eyes of family and friends cast along the frame of an ED sufferer; pupils travelling the ridges of the clavicle, the skeletal hands and down the birdlike legs.

Just say, I CAN do this

Just make up your mind that you’re GOING TO do it and then DO IT

Lots of ‘justs’. Lots of good suggestions. Lots of spilled frustrations.

So why isn’t it ‘that simple’?

Surely it’s not rocket science…

Well…. in actual fact, although it’s NOT about rockets, there is quite a lot of science involved; physiology to be precise.

When someone is well below a healthy weight, the list of psychological blocks to recovery may be a mile long. However, unbeknown to many, there are also many physiological reasons. Chemical and hormonal shifts in the brain that induce behaviours which can make it incredibly difficult to behave in a ‘normal’ way around food. Experts in the ED field will tell you that a full recovery isn’t possible until weight has been restored to the point where a patient’s BMI is between 20 and 25. In fact, many argue that it is ONLY when a patient reaches a safe, healthy weight (and so, BMI) that recovery can begin.

I agree.

One of the strongest pieces of supporting evidence we have for this idea comes from a ground breaking, wartime,  experiment into the effects of starvation, performed by Dr Ancel Keys.

In 1944, as war raged throughout the world, Keys recruited 36 young men (mostly conscientious objectors) all deemed to be at a peak of physical fitness and mentally / psychologically healthy.  Over a period of a year, he studied the behaviours and mind set of the men as he systematically cut their calorie intake and increased their levels of exercise . By the end of the ‘starvation phase’, the men had lost around a quarter of their body weight and their physical appearance was skeletal.

Photographs of the subjects reveal bodies not dissimilar to those who had suffered in concentration camps. Certainly, the men appeared to have been subject to a lifestyle which denied them of their most primal need; much like the self inflicted discipline exercised by those with Bulimia or Anorexia Nervosa.

For someone attempting to recover from an eating disorder, the most pertinent revelations of ‘The Minnesota Experiment’ lie in the fascinating changes in behaviour displayed by Keys’ subjects. Behaviours and attitudes practised in secret, cloaked in a horrible sense of shame, perhaps feared by the sufferer to be so ‘odd’, so far from ‘normal’ that nobody should ever find out… Behaviour that actually, The Minnesota Experiment, proved to be a direct result of the human body being starved and therefore, some way beyond the sufferer’s control.

Keys documents that the more the men starved, the more overwhelming was their obsession with food. Food became an absolute priority while the rest of the world, family, politics, opinions, religion etc, all faded into obscurity.  The men were restless, their minds unconsciously forcing their bodies to forage for food, allowing little sleep as the need for nutrition overrode all other basic needs.

Interestingly, all the men developed ‘abnormal’ eating patterns, becoming ritualistic, taking up to two hours to eat a meal, cutting food into tiny pieces,  mixing food with liquid to make more of it and hoarding food so they could take it back to their bunks and graze on it. Moreover, the thinner the men became, the less able they were to judge their size as being thin or underweight. A few of them even went so far as to express thoughts that others were too fat. Spot the quandary of an Anorexic.

There were many, many physical effects, most of which an Anorexic will experience as par for the course, but in order to explain why it’s so damn hard to ‘just eat’, I wanted to draw from the physiological findings of Keys’ experiment. The state of semi starvation, of extreme self denial, is in itself, a trap. Being below a healthy BMI produces its own set of barriers to eating, making the initial ‘pre recovery / weight restoration’ phase about as difficult as it could be.

It’s really not as simple as it might seem.

Certainly, during the period of re-feeding, the men ate happily (obviously not suffering from an ED) but my point is that whilst starving, the men underwent such changes to the chemical balances in the brain, that food became an absolute obsession and habits previously unheard of, became commonplace.

When an Anorexic tries to recover, they not only battle the mental blocks that the illness creates, they also have strange, unseen physiological blocks.

(Another terrible hidden suspicion of The Anorexic, that their appetites will become insatiable once they begin to refeed, is also borne out in Keys’ evidence, producing yet another barrier).

I could go on and on about this great study in starvation, but it’s all for another post. What I want to convey is that, despite all appearances, recovery is never as straightforward as ‘just eating’. Refeeding, within itself, is fraught with unconscious physiological blocks and hurdles.

For me, personally, despite this knowledge, and armed as I am, I still stand on the wire, looking at that vast expanse that is ‘no man’s land’, weighing up the risk, trying to see where the mines are set, where the searchlight falls.

It’s been ten years raging, this war.

gripping barbed wireI still want to fight…

…but the real enemy

lies in the woodland

on the horizon

I still need to make it to.

THAT’s the pathology of an eating disorder.

THAT’S the physiology of starvation.

… I’ve given up blogging… Anyone stumbling upon this site could be forgiven for thinking that this is just yet another open ended account of a person whose fingers stopped typing, whose mind stopped composing.  I come across them so often. Those who suddenly stop. Dead? Fulfilled? Too busy?

Anyway, as I say, to all intents and purposes, it looks as though I too have joined the unblogged.  The reasons are many but, irritated at the fact I feel something akin to guilt, I am deliberately choosing to keep them to myself. (As though THAT’S going to make a difference).

For anyone interested, what follows is an update.

After thirteen long, gruelling (yes, that is a pun on hospital food) weeks, I finally left the unit where I was an inpatient. In truth, my reasons for choosing discharge over a longer stay were driven by the Anorexia. A fact which I was very open about but also very upset and frustrated at.

The expected rate of weight gain was a minimum of 1 kilogram  per week. If this wasn’t achieved, the weekly ward round discussion invariably resulted in an ‘increment’ being added. In the language of the real world, it means that another 300ish calories were popped into your meal plan, so in addition to your 70g serving of breakfast cereal, you’d have 2 pieces of buttered toast in the mornings, or a pudding after your lunch, then another at dinner… All these options discussed, argued, wept over, refused over a patient’s admission.

My second time in this unit, I got as far as a second ‘increment’ and was defeated by the addition of puddings.

Many readers will scoff and shrug at this point, unable to comprehend the absurdity of the Anorexic dilemma. I get that. I too find it ridiculous that, in an underweight, malnourished state, I refuse to eat a small bowl of apple sponge and custard (though honestly, you could fill walls with the stuff) because I am terrified of what it will ‘DO’ to my weight… I’m scared that that bowl will be the thing that layers itself onto my thighs, adding inches, smears itself around my insides, pushing me outwards, thickening my stomach, disguising my waist.

It’s craziness.

“Not very PC!” cries the world of mental health.

“Not very empathic!” cry the sufferers

But it is. I insist. It is crazy. Which is why, like it or hate it, Anorexia Nervosa is a mental illness, not just a fad or a phase, not an addiction, not a lifestyle choice, not a decision taken by the vain. It’s completely mental. It’s a trick played in the mind of an otherwise very rational being. It almost borders on psychosis; the infliction of unreality, the blindness, the invasive thoughts and sensations.

Recovery though, that IS a decision. It’s one I made when I chose to go into hospital, despite my knowledge that I would have to face my worst nightmares. Despite the fact I would end up crawling on my floor, doubled up in an unspeakable and inexplicable agony.

I’m not saying I want a medal. I’m not boasting. On the contrary, when the going got too tough, I ran. But I’m home in a better state than when I left. What I forget every time though, is that the freedom that looks so appetising (pun-tastic here) from the confines of a prison, isn’t freedom at all. I remember now that the prison isn’t a locked hospital ward. It’s not twelve bedrooms down a squeaky corridor, or a cramped obs room where you sit in stillness til your time of rest is over. The prison is inside. It’s there when you’re ‘out’ as much as when you’re in. The difference is that the freedom you smelled on the inside, comes from not pla
ying by the rules you have to abide by when you’re in.

Fprison-bars-handsreedom for me, right now, is what I get when I skip a snack or skimp on a meal. Freedom is exhilarating, dizzying, confusing. It’s less calories than I had in hospital, less carbohydrate, less fat. And I feel great… in the moment…

But in an cruel, ironic twist, I’m still a prisoner. And it’s at the times when I most celebrate my freedom, that the walls move closer and the chains get tighter.

In my last post I think I may have explained that I was accepting a third round of inpatient treatment, which I hope will go some way towards explaining my temporary absence from the blogsphere.

It’s been four weeks.

Four weeks of a graded increase in food.

Four weeks of setting up my small bedroom and equipping it with things that will make it look less like a hospital and more like student digs.

Four weeks of adjusting my routine; of getting used to eating six times a day,  of sitting still in a crowded communal lounge for a total of four and a half hours each day, often subjected to death by American ‘comedy’ interspersed by the even more torturous Jeremy Kyle show and Hollyoaks.

Four weeks of sussing out the eight other patients; logging their individual idiosyncrasies… getting to know who experiences distress at the mention of the weekly menus,who cant touch anything after eating for extreme fear that there exists a phenomenon whereby calories can be transferred onto any object she touches.

Four weeks learning to tread carefully around topics others find ‘triggering’, learning who responds to a hug and who shrinks from it, leaving and receiving little notes of encouragement and kindness.

Four weeks of interacting with different staff nurses and health care assistants.

Four weeks of twice weekly ‘weigh ins’; the unavoidable moment of fear, where figures flutter round, and then pierce, the early morning brain fog.

Four weeks and I feel hopeless and despairing because the pain of weight gain, albeit gradual, feels increasingly frightening and I just don’t know if my courage can hold out for the long haul.

I’m not going to write about all the reasons why I was the least likely host site for Anorexia to burrow into. You’ll just have to trust me when I tell you that nobody could believe it, me included.

However, just ONE of the reasons why I am an unlikely candidate, is the fact that I have always been regarded as being “a block of sense”.

It’s true, I have suffered with lifelong anxiety, something which has only really been acknowledged in more recent years, but as a general rule, certain phobias aside, I really am an incredibly pragmatic, diplomatic, rational thinker.

I don’t mean that I can do all the lateral thinking puzzles that MENSA books torment people with. I don’t have an endless chain of resolved Rubik’s Cubes.  And I don’t sit down everyday to complete the Times Cryptic Crossword, just for kicks.2000px-Rubik's_cube.svg

No.

However, I DO have a high proportion of common sense and very level head.

I don’t mean to blow my own trumpet, and again, you’ll have to trust me when I say that arrogance isn’t something that has been a strong feature of mine, but at the end of a long chat last week, a struggling friend looked at me quizzically and asked, “how did you get to be so wise?”.

At the time I shrugged it off, but later I heard it echo and I wondered… How come I have all this wisdom, and yet, can’t apply it to myself. How is it that I can see lights in other people’s tunnels, yet my own is the darkest shade of black? How can I have such insight into the pain carried by others, while I stumble in blind circles? Why can I feel what they feel, but not what I feel? How is it that people are consistently impressed with my intellect, my ‘wisdom’, when all the while,  my Anorexia is behind the scenes calling the shots.

It was my friend’s question that spurred me to write this post, because I want to illustrate something of the devious nature of an Eating Disorder. I’ve heard it suggested that sufferers of this illness choose to be thin in a ‘supermodel wannabe’ sense; that it’s vanity. I’m here to set the record straight. On the contrary, my illness makes me uglier, far less attractive.

I’m writing to explain that I CAN’T EXPLAIN how it is that my rational mind understands that I can’t be fat. It sees the figures on the scales at weekly weigh-ins at the unit. It hears the calculation of my (stupidly low) Body Mass Index, and yet, the Anorexia wraps itself round it all, and perverts it, twists it and denies it.

Lots of people ask the question, ‘do Anorexic’s see themselves as ‘fat’? It’s a massive (no pun intended) concern for those seeking understanding.

I know I’m not fat. Many seasoned Anorexics KNOW this on some level. I do however, feel that I look ‘normal’. I don’t see ‘underweight’. I don’t EXPERIENCE ‘thinness’.

So, I’m shocked beyond belief at a picture my dad takes of me.Picture altered to make background less recognisable.

I can’t recognise the scrawny person in it. She can’t be me. surely?

This is what I want to purvey. This is what I want to educate people about, because I think it’s the hardest aspect for those who watch, to understand. A person may have an IQ higher than the year they were born, but their perception of themselves can be as skewed as the government data on employment. Even with this photo, and the fact that I’ve lost weight since. I still cannot compute that I really look like that.

Such is the complete distortion of an otherwise rational mind. It’s one thing to know something in your rational mind, it’s another to experience it as ‘being real’. In this sense, I make the (somewhat controversial) assertion that Anorexia has an element which is akin to psychosis. This is where the illness becomes a mental health problem, rather than a ‘state of mind’.

 

 

“Rebel against your own state of mind…”

The background noise penetrates my concentrated, musical rhythm of ‘knit one, knit one below, knit one, knit one below’…

A glance at the TV brings an advert into sharp focus; a sleek grey car wheeling across a dramatic rural landscape. It seems obvious that it was a car ad but really, it might just asRebel well be the Scottish tourist board (or another bloody Party Political broadcast – Please no more!)

It’s not important. What matters is the fact that I’m having to count my stitches again because one sentence has lodged itself in my mind. It’s vying for my attention, playing on a continuous loop which forces me to stop counting and think properly about how this one sentence resonates deep within me, and how relevant it is in the context of my recovery and, perhaps, recovery in general.

My state of mind is founded on a determination to recover.

But it’s complicated.

‘Complicated’ because I swing between an absolute conviction that I WILL beat Anorexia and that I CAN and AM; and the absolute desperation that highlights the impossibility of it all, the futility of trying and the agony of succeeding at weight gain. (Yes, the presence of absolutes is noted).

The twisted paradoxes that lie like fatal, open jaws, are manifold and make the journey towards recovery all the more perilous for those who crawl along the path.

I want to eat, but I don’t want to gain weight.

I want to gain weight, but I can’t let myself eat.

I pick up my food, but I can’t put it in my mouth.

I drool over supper that I scrape off my plate

I eat all my meals, but I can’t keep them in

I cut off my nose…

Irony after irony. Stacked up, an impossible pylon to climb up or climb down.

I’m losing my thread (which won’t come as as surprise). The point is, in order to recover, I have to rebel against my state of mind.

Anorexia has become a default setting, a default state of mind. It is no longer possible for me to remember when I didn’t much care what I ate, when life wasn’t just about food, or no food. Even when I am absolutely convinced that I am going to crack it, determined that I can do it, the resolve can evaporate before I can pull the top off the yoghurt.

Rebel against your state of mind.

This six word commands a practise that might help in the battle towards restoring some of the balance that the eating disorder has stolen. Rebelling against your state of mind means a battle, a defiance, a disobedience.

Making peace with my state of mind will be about as successful as Chamberlain’s approach to Hitler. Appeasement is not an option.

I realise this post is a slightly bizarre conglomerate of thoughts and metaphor. Out of the habit of writing, I am at once struck by how much Iies unexpressed, and how tangled and tangential, my thoughts.

A peacemaker would beg forgiveness but in a spirit of rebellion, I post this anyway and pretend I don’t care.

… sometimes takes more courage than to continue a fight.

Image may be subject to copyright

Image may be subject to copyright

Sometimes it makes more sense to submit than to lose everything by fighting a battle you’re not equipped enough to survive.

That won’t please the shiny miracle brigade. Those who remarkably manage to cling to a hope that pays off once in a very blue moon. I’m not saying anything is impossible, just that suggesting that holding out hope can sometimes be a little like burying your head in the sand.

Believe me, this isn’t an easy thing to write on a blog referencing hope in the title; a blog whose very essence was supposed to be hope. A place which might offer encouragement to others, and help deepen understanding about the struggle of recovery, insight into the world of mental health and eating disorders.

However, it would be dishonest to spout rubbish about a recovery that I haven’t yet made. This is where I find myself; admitting defeat. I’ve had to have an honest look at No Man’s Land and an inventory of my fire power tells me that I need to regroup in order to stay alive.

I am being admitted to an ED inpatient unit on Monday. The admission is for a month, at least, so that they can prevent organ failure and minimise the risk of death that is posed by my current BMI. (Body Mass Index, for those who may not know, is a calculation of relative body mass and height, which gives an indication of where an individual is in terms of the healthy weight range of 20 – 25).

I’m lying in the trench, a little wounded and very weary. It has taken guts to submit. I’m losing the battle in the hope that I might still win the war. If I carry on fighting, there’s absolutely no chance.

Tipped out and raked through, the innards of handbag look like an Emin – style installation.

I could write more about this, but this isn’t really the place for theorising about what does and doesn’t constitute a work of art.

I’m focused on one particular thing (though I may list or photograph the contents of my bag for those whose curiosity has been inexplicably peaked).

Amidst the clutter, the handbag holds the main thrust of my last weekly appointment at the Eating Disorders Unit. A folded piece of crumpled paper. A list, scrawled by my clinician in desperation: “Reasons to Increase Weight”.

Turns out that the essence of this list can’t permeate the tan leather of my bag. It isn’t going in.

Which brings me here. Perhaps the skin on my fingertips is more permeable? (I jest)2014-12-08 16.55.06

SO:

I want to increase my weight:

  • To prevent my organs from packing up
  • So I’m not hungry all the time
  • To have more energy
  • To be able to write
  • To be able to get a life?
  • To be able to eat out again.

They’re pretty broad… but it’s hard to think about the possibility of ever being well, especially when the illness has eaten so much of your brain; Worse, your hope.

I’m getting nearer that piece of land between two warring factions. The Anorexia versus Team ED. I should be in there somewhere… perhaps a third party divided between the camps. But I’m not.

Truth is, I’m lost at this point in time. The daylight is fast fading, the guiding lights are all extinguished and I’m stumbling through no man’s land clinging onto a crumpled list of reasons.

I can stand for ages in the ‘greeting cards’ section of supermarkets or gimmicky gift shops reading the captions under funny cartoon pictures of penguins, small pen sketched characters, or black and white photos of men and women from a bygone era. More often than not, there will be something that makes me laugh loudly enough that I have to throw a couple of sidelong glances to check that nobody within the immediate vicinity is looking at me as though I am obviously mad.

A lot of the cards will adapt a formulaic linguistic structure; “X knew that she / he was _________ when he / she ___________” .  For example, ” You know you’re getting older when…” followed by the punchline, …” ‘happy hour’ is a nap”.

Amused?

Have a few more…

You know you’re getting old when…

  •  the candles cost more than the cake

  • you and your teeth don’t sleep together

  • you have to scroll to your date of birth

  • your friends start having kids on purpose

  • an ‘all nighter’ means not having to get up to pee

You get the picture?

Right.

I was trying to tell a friend a little bit about the treatment I receive at the unit I attend daily in order to restore my weight and, hopefully, recover a little bit of my mind… (I hardly dare type those last seven words). My friend couldn’t really grasp the fact that I wasn’t feeling proud of myself for managing to stick it out for the last nine weeks. She felt that I should be happy to be gaining weight and ‘getting my life back’.

Careful not to sigh, I resigned myself to the fact that there are many people who will never comprehend the fact that recovery from an eating disorder is a long and rough-road-ahead-signtorturous process. It is one of the few illnesses where, the ‘better’ you are doing, the worse it feels. I can only liken the dichotomy between wanting to be well again and wanting to starve as having my left and right limbs tied to two opposing poles which are subsequently pulled in opposite directions. It is torture.

Just like the greetings cards, I had a flash of this image with the caption, ‘You know you are in recovery when…”

And there are so many ways I could finish this sentence that I could be here all night… But I guess the truth of it is, you know your’re in recovery when:

  • your actions are a direct contradiction to the voices in your head.
  • you want to use a wood plane to shave the flesh from your bones
  • the treasured silence of your starvation turns to desperate, strangled sobs
  • just being in your body feels so horrific, you writhe and twist and rail
  • you meet ‘weigh days’ with a dread that simply cannot be put into words, and then a weary resignation.

You’re gonna have to forgive the starkness of the description. I don’t think there’s a way I can ‘soften’ the truth about what recovery from an eating disorder must entail in order for it to be real. Recovery can be
half-hearted. You know you’re not doing it right when, for example,  you are compensating at home for the food you eat when you’re there. Or, you’re getting out and sticking your fingers down your throat. Or you’re going running or over exercising.

You know when you’re doing recovery right when you’re living in hell.

I have just completed my third week of refeeding at the day treatment unit and it has been nothing short of agony, which is a tough thing to be honest about because I want this site to be about positive encouragement and support. I want it to be inspiring for those who are thinking about going for treatment, motivational for those who are sitting on the fence, unsure which way to drop.

However, I also want it to be realistic and honest. Just as I’m not a great advocate of polite, ‘home counties, garden party speak’, I’m not great at literary niceties. It is possible (on reflection) that I value honesty above all other virtue. In the words of wannabe surfboard – wielding  teens the world over, I have to ‘keep it real’.

Back to the concept of agony then.

To any ‘normal’ person (for the purposes of this post, let’s just assume that such a thing exists) the idea that sitting around and eating all day should be anything other than a pleasure, sounds ludicrous! If I offered most of my friends the chance to take a few weeks away from work to join me in treatment,  they would literally jump at the chance! I almost wish that I could offer it as a free gift on one of those LoveFilm ‘friends and family’ type cards for Christmas.

For an anorexic however, the relentless pattern of snacking and sitting and eating and talking, resembles the slow medieval torture of The Rack; the steady tearing of bones from sockets, muscles from tissue and flesh resembles the inner sensations of being torn apart. Sounds dramatic? Perhaps, but I fail to find metaphors which can adequately illustrate the pain of beginning recovery.  Admittedly, being severely underweight heightens the trauma of refeeding, physically as well as mentally, but it’s a pretty horrendous process wherever you are on the BMI scale.

What I think is an important point to emphasise at this stage though, is that despite the immense increase in my calorific intake, in three weeks, I have only gained point 5 of a kilo overall. That’s a pound (in old currency).

We are weighed twice a week on a Monday and Thursday  (an event so anxiety provoking I am woken by palpitations in the early hours of a Thursday morning).  The pattern for me has been a predictable gain on the Thursday and loss after a weekend of Anorexia V Relief at ‘Respite’. The harder you work at the eating, the greater the agony as the Anorexia rears its demonic form, screaming and contorted, afraid of losing even an inch of its grip.

agony1

At this point, there is no comfort.

If Anorexia is being frozen to death, treatment is a hot water bottle that burns if you hold it close.

It flogs as it spares; it blinds as it darkens; it kills as it saves.

And just as the illness commands a dying body to keep dragging itself over upturned shards of glass, so recovery demands that the same body be dragged in the other direction.

Agony.

But

if you have to suffer it,

it may as well be suffering towards recovery.

Right?